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New member

Just found this forum, glad it's here.

I have SLE and in need of support. Anyone experience mouth ulcers? It took six years to finally diagnose my lupus but can't seem to get new physician to really do anything about my flare-ups other than Prednisone. I cannot obtain insurance through any agency and cannot afford costly tests, medications or specialists. In the past I have seen every kind of doctor available and had every test imaginable. My primary flare-ups tend to effect the brain, mouth ulcers and now uncontrollable high blood pressure (160/120). I had discoid lupus in the past but none for the past 5 years.
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I do have a lot of heart problems because of the lupus such as mitral valve prolapse and now aortic valve prolapse. I have major inflammation in the lymph nodes, with the right lymph nodes in my neck being removed. My longest flare-up was for six months.

It's bizarre that no one in my family for nine generations has had lupus. No one in my family for eight generations had melanoma (which I also had removed).

I have also been diagnosed with narcolepsy, fibromyalgia, GERD, asthma and my doctor is currently investigating my new diagnosis of early onset of Alzheimer's disease. I just figure all these diagnosis are connected to the lupus. Anyone else with similar illnesses?

New member

Lady Di; Hello and welcome to our site. I my darkest Lupus days, I too suffered from ulcers in my mouth - they were so painful and so large, I could not eat. When I did eat, it took forever to finish a meal 'cuz I had to eat so slowly to avoid food falling into those ulcers. Most of mine were on the roof of my mouth! I, too, was given prednisone and plaquenil for the lesions (which I also had in my scalp, on my face, huge raw lesions on my hands and the bottom of my feet) I couldn't walk, couldn't eat, couldn't even brush my own hair!!!
I am so sorry to hear about your problems with finding health care. Our moderator, St. James, seems to be proficient in that area. In the meantime, check the Lupus Foundation of America's web site, they may have some information about getting health care help - http://www.lupus.org
We are here to give you support, comfort and any information that we can gather for you. As I say to everyone here, you are not alone - not at all! We want to be here for you!
Take Care
Saysusie

New member

LadyDi....
So sorry to hear of all the garbage life has thrust upon you at this time. Unfortunately with the ulcers or leasions the only thing that really does calm them down is PREDNISONE, yet it is not a good long term drug as it becomes detrimental to you eyes,liver and kidneys. Alot of what you described is all connected to LUPUS and unfortunately the treatments are merely just a cover up of the symptoms. Like taking cold medecine...it doesn't get rid of the cold any faster it just masks the symptoms. Usually the DISCOID side of LUPUS has got to run it's course. there's all sorts of creams and lotions to put on them for some relief from there aggrivating effects but unfortunately even after them closing and healing with a regiment of PREDNISONE, they come back until they have run there course.

Having BOTH SLE and DISCOID I know what you're going through and I would suggest a few things....
1...Get a Cardiologist
2...Get a rheumotoligist

If you have trouble finding one in your area please let me kow where youare and I will do the research for ya.
I too have the same heart problems and have had 2 heart attacks.......the only thing that doesn;t sound right is with a mytrovalve prolapse and an aortic one as well your blood pressure SHOULD be LOW....real low!!!!
Mine is usually around 90/60 and is due to the mytrol valve dysfunction.
Your heart works by PRESSURE....as your heart pumps and fill when it reaches a certain pressure it forces open the valve.....when you have the PROLAPSED valves they more or less FLAP back and forth thus LOWERING your blood pressure.
At this time since you already seem to have a doc who is somewhat educated with your problem I WOULD URGE YOU to seek out that Cardiologist ASAP and the Rheumotoligist.

Lupus is hard enough to treat my doctors who underatnd and are well versed in this field. With all the contributing factors and diagnosis's that continue to pile up, I do believe that you need to be more diverse with doctors and have more specialist rather than a GP dealing with the entire problem.

To answer your question of WHY YOU?????
It's simple LUPUS like LUKEMIA pics and attakcs whoever it wants.....whenever it wants so geneology does not come into play, so don't worry that you may have passed this onto your children.

Some of the other Diagnosis youtalk about are also just symptoms of LUPUS.....

Please do yoursef a favor and FIRST you NEED
to calm down as that will only aggrivate the problem...whatever it takes for you to be able to relax wether it be a therapist who teaches you how to put yourself into a peacefull trance or it be a VALIUM you MUST TRY to be STRESS FREE. As STRESS is like FOOD to LUPUS and it thrives on your decline of strength and being stressed out take alot of calories and work from you immune system that you need.
AND WILL ALSO RAISE YOUR BLOOD PRESSURE!!!!
Please see those two doctors mentioned, and get back to us at your earliest convenience and let us know how you feel once some of these other problems have been addressed.

Until then remember YOU ARE NOT ALONE...and stay off the internet doing research it alone will scare the crap out of you and get you STRESSED!!!! Take care of yourself best you can with your diet, sleep, and exercise. etc

Let me know if you need help finding a DOC in your area....I'll await you reply

New member

Thank you SaySusie and StJames for your help. I did see my doctor again today and blood pressure has come down but I still have the mouth ulcer (tongue) and I have swollen, rash covered eyes. I've never had the eyes do this before.

Doctor said that I was having a full organ flareup involving all the organs, lymph nodes, salivary glands and even the brain. Prescribed Prednisone again and hope this will work.

I do have a cardiologist but he says my GP is doing fine monitoring my heart. I have looked in the phone book for a rheumatologist, but I'm sure the office visit is more than I can afford to handle right now.

I am on Soc. Sec. Disability but my income is too high to qualify for Medicaid. I have one more year on Disability and I will be eligible for Medicare. I have tried every insurance company I know and they all say with all my health conditions being life long, there isn't an agency that will cover me.

New member

Hi LadyDi,
I just joined as well. I have been a Lupus sufferer for 10 years, diagnosed only 2 years ago. I have been in a period of recurring and increases intensity of symptoms of fatigue, overall body pain, minor mouth ulcers, indegestion, depression, difficulty sleeping, etc. since March 2002.
It is good to have a Rheumotologist monitor you. I am seeing one as well. 4 months ago I found a nutritional supplement (all natural) that has helped me tremendously, and helping me to get my life back!
I have not felt this good since I was taking prednisone 2 years ago. I since got off of it, since long-term use is detrimental to your organs.
Please see my homepage listed in my profile to get more of my story and links that may help.

New member

I have found a thing called majic mouth wash or also called triple swish and spit helps the mouth sores. It is a perscription medication with the use of maalox, lidocane and benadryl. Ask your doctor about. It helps numb for the pain, decrease swelling, cleanse, and change ph to aid in healing.

New member

Lady DI.
Sorry it took me so long to get back but I too have just been through a bit of a battle with my condition but I'm back on track for now.

If your having problems affording a Doctor right now due to the waiting period with SSD there are plans available that will make it possible for specialsits to still see you.

I suggest you call you SS office and ask them.
If you get no-where with them call the
ASSOCIATION for laws and policies for Disabled persons.
If that dosn't work call you STATE REPRESENTSATIVES OFFICE and your SENATOR's office.....remember it IS the squeeky wheel that gets the grease!!!!

There are many programs to help out people like yourself on a limited income and most Hospitals will help out such cases as well.

Let me know how you make out and PLEASE try to relax as I think all this confusion and unsetteling news is helping your breakouts to be worse and increasing your suffering.

If you have trouble finding a DOC that will help you in the financial situation your in let me know and I'll try to apply a little pressure on some organisations for ya.